Questions first, since some of you might want to skip the history.
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Anyone with schwannoma induced pain still have the same nerve pain after surgery has removed the tumor?
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Anyone try Neurontin and Trileptal together? That’s what I’m currently trying, since nothing other than opioids works alone. However, three weeks in, and I’ve seen a 60% reduction in pain, but it doesn’t seem to be going lower. (If your pain comes in fairly distinct shocks or boring sensations like mine does, I’ve found a simple counter device helps keep track. No one wants to walk around all day with one of those though, explaining to everyone what you are doing, so I use the Clickr app on my Apple watch, which makes tracking pain and medication a breeze).
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Anyone have success with opioids? Oxycodone seems to be the only effective thing for me, but it is so hard to get now. I am not an addict, and maintaining just 15 mg twice a day has done wonders, and I don’t have the terrible side effects I had with Tegretol and Indomethacin. However, I know it is easy to become addicted and doctors now don’t want to prescribe it, so I am searching for alternatives. However, however, I’ve seen at least one study (https://www.ncbi.nlm.nih.gov/pubmed/21652789) saying it works well in combination with Tegretol, but I prefer Trileptal much more.
Really just trying to find the right combination of meds that don’t make doctors lecture me every single visit. I really want to try cannabis, topical, ingestible, smokable, but I live in Oklahoma and China, so that isn’t an option. I’ve heard Charlotte’s Web and some CBD topicals are great, but I’m trying to hang on until I graduate from school over here.
I started suffering some slight, electric shock sensations around 2010, but despite several MRIs and pain that progressively got worse and worse, doctors did not find the tumor lurking behind my left eye until 12/2016. I had a biopsy done on his buddies that were on the outside of my eye to confirm that they were benign. However, my pain just kept on getting worse as it had been, and I just recently had a craniotomy 6 weeks ago. Since the biggest tumor was basically on my opthalmic nerve, I had a great neurosurgeon, Dr. Michael Sughrue, and a great ophthalmic surgeon, Dr. Annie Moreau, at the University of Oklahoma Medical Center perform the surgery.
They did a fantastic job, so I didn’t lose my vision or have any complications. In fact, I was able to take a plane to go back to my life in China less than four weeks after the surgery (they told me aside from medication, the only thing we could do in the next 100 days was wait for it to completely heal, and I’m on a full scholarship to get my master’s here, so I really wanted to get back to life and stay on track).
Unfortunately, my pain is still pretty much the same as it was before surgery. Neurontin and Trileptal have reduced my as mentioned earlier, but I still have some serious pain episodes, my face is still swollen as it was before surgery and has been for the past two years, can’t sleep well, definitely can’t sleep on that side of my face, can’t wear glasses, etc. I want my wife to be able to touch my face without hesitation. I want to have a kid soon, who I know will inevitably touch it. And I want to touch it! My skin is peeling and gross because I hate doing anything to it, including washing it. I’m so lucky my wife understands.
Thanks to all of you who took the time to read my story, and thanks to anyone who has any ideas. And best of luck (because we need a lot of that) to all of you fellow sufferers out there. Be strong, meditate, drink water, sleep on a schedule, eat healthy, exercise, research, advocate for yourself with your doctors, leave everything else up to the universe, accept your pain, and be grateful when it isn’t there. Other than those things, there really isn’t much of us can do.